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Advance care directives: making plans for future medical care

Larry Beresford is a freelance medical journalist in Oakland, CA, with a specialization in hospice, palliative, and end-of-life care | @larryberesford

Telehealth and other digital tools offer new ways to connect patients, providers, and families in navigating critical health decisions.

Advance care planning is part of a process for clarifying and specifying the kind of medical care people might want if they were to become a lot sicker or even lose the ability to speak for themselves. Advance directives are legal documents designed to capture the sentiments generated through advance care planning for use in a future medical crisis when that information might be helpful.

But despite fears about the medical juggernaut of unnecessary, unbeneficial or futile invasive treatments at the end of life, most people don’t bother to complete these documents. The subject is off-putting, the legal language can be intimidating, and it’s just hard to imagine what kind of medical care one might want in some unspecified, distant future scenario.

Even when people fill out the form (easily downloadable from a variety of online sites), there’s no guarantee that their expressed wishes will be honored by medical providers when the time comes. They may not share their thinking about these issues with loved ones, so the family isn’t on board with the plan. And if there is a document, it may not be readily accessible when it is needed most—perhaps because it’s stored in a safe deposit box or because the crisis occurs when the patient is a long way from home or something unexpected happens, like a car accident.

Iris Plans is an Austin, Texas-based advance care planning service that applies a remote videoconferencing app to these problems, using trained health professionals to facilitate meaningful conversations with the patient and as many loved ones as care to log onto a video conference call. The end result of this process typically includes a legally valid advance directive and an online archive of the patient’s wishes and fears, preserved on video for future reference.

“But we’re a discussion company, not a document company,” says Iris co-founder and chief medical officer Stephen Bekanich, MD. “Our value is in bringing patients and families together to talk about these difficult subjects.” The power of Iris’s goals of care video conference is for people to see and hear each other and the words and language and emotions that are expressed, rather than reading what’s on a piece of paper.

The heart of the Iris approach is the HIPAA-compliant teleconference itself, usually two to three sessions of 40 to 60 minutes each. The facilitator asks leading questions appropriate to the patient’s age, medical condition and other personal factors. Family members want to be included in these discussions, Dr. Bekanich says, and sometimes there may be seven, eight or nine participants on the call. Everyone gets to ask their questions and hear the information at the same time.

Disagreements and misunderstandings often arise, but it’s the facilitator’s job to help resolve them. “It’s not that conflict is a bad thing; it usually arises out of love,” he says. At the end of the conversation, documents are auto-generated using the Iris technology for reviewing, signing online, and sharing with whomever the patient designates. And the whole process can be updated as needed when goals change.

Bringing the Family Together

Bekanich is a palliative care specialist who is used to having these kinds of conversations in his office with patients, talking about what they can expect from their medical condition and what is most important to them in the face of serious illness. But that’s hard to do with all of the other people in a patient’s life who have an investment in what happens. Some have day jobs; others live across the country.

“We realized that by using technology we could bring all these people together,” he explains. The company started out bootstrapping in 2013, marketing to consumers while building its technology platform. “Now we’ve gotten to enterprise-level partners, which generally are groups interested in value-based health care.”

Iris Plans’ service typically is paid by the health plans and health systems responsible for health benefits or covered services. Clients include Humana, Innovista, Aledade, the University of Utah Health Care, and Brookdale, a senior living company. But health plans don’t get a copy of the patient’s document. It might go to the patient’s doctor, hospital or anyone else the patient specifies, and it’s stored in a protected hub online.

The service is billed to the client, not the patient, after the family has completed its advance care planning. “We are not incentivized in any way to steer people to a specific outcome. They don’t even have to sign a document if they’re not ready. Our job is to educate and help people navigate these complex issues,” Bekanich says. He estimates that Iris Plans has facilitated about a thousand such advance care planning conversations in the past year, and it has received venture capital to scale up for expansion in 2018.

Other Technology

A number of other firms and organizations have launched products designed to overcome the identified problems of advance directives, trying to make them easier to execute and easier to access when needed. That is important because of the huge variability, regionally and otherwise, in whether terminally ill patients get to die at home or with hospice—rather than in an ICU, hooked up to high tech medical equipment, says Susan Tolle, MD, director of the Center for Ethics in Health Care at Oregon Health Sciences University.

OHSU was an incubator for a new kind of legal document called physician orders for life-sustaining treatment (POLST), which patients use to specify end-of-life treatment options when they have advanced illnesses, and it has partnered with the California tech firm Vynca to enable health care providers in the state to quickly access the 172,000 active POLST forms in Oregon’s electronic POLST registry. But prompts for accessing POLST and advance directives also need to be built into hospital electronic health records, Dr. Tolle says. Ideally, they would also be accessible to emergency medical technicians in ambulances. “How do we help the medical system take every little thing, including what’s on video, that patients have said they would want? All of these kinds of programs can increase the chances of their wishes being honored.

A/D Vault’s MyDirectives.com of Richardson, Texas, which started in 2007 and went live in 2012, is the country’s largest digital advance care planning service. It allows people to create, update and share their own digital advance care plan online, reflecting their values and treatment goals and incorporating messages, video posts and photos. These are then available to any authorized medical providers anywhere in the world, says CEO Jeff Zucker. “We believe every consumer needs to live with the confidence that their voice will be heard. They will get better health care because it’s the medical care that they would want.”

MyDirectives is part information system and part technology with an emphasis on work flow and on desensitizing advance care planning. People should do it while they’re still healthy, just as with life insurance, Zucker says. “We want everyone over the age of 18 to create an advance care plan. They can own it, manage it and keep it current with their evolving values through their MyDirectives account.”

For a real-life flavor of the kinds of conversations facilitated by Iris Plans conversations, see this brief clip from an actual advance care planning teleconference session.